BOOK CHAPTER: Band on the Run (CFS) by Rick Carlson

Discussion in 'Fibromyalgia Main Forum' started by lenasvn, Nov 2, 2006.

  1. lenasvn

    lenasvn New Member
    Buy this guys book! I will!! Moderators: Please don't hate me for posting such a large text,,,:)

    Chapter 6
    Band on the Run
    Rik Carlson
    Well before my time, others had paved the way with this new disease.
    My limited success, especially with supportive physicians and Social Security, was built on the backs of thousands who paid a much bigger price. Life can be unfair. The medical and political history of CFIDS from 1985 was brilliantly but ponderously outlined in Osler’s Web (Crown Publisher’s Inc., 1996) by Hillary Johnson. Belatedly by years, I followed my brother Phil’s advice and picked it up. I wanted to be oblivious to the politics. Wasn’t today the day they picked up the trash? I think so. It’s my job to get the trash to the curb every Monday. Then I wait from behind the bushes. The trash guy knows I’m watching too, because he caught me once. It anchors my week.

    Incline Village is a fairy-tale town in the mountains outside of Reno, Nevada. It’s surrounded by snow capped peaks and nestled on the north shore of majestic Lake Tahoe. The village is a world class resort community with an exclusive tourist trade and an even more exclusive year- round population. Dr. Dan Peterson established himself there as a family practitioner in 1980 and a few years later added Dr. Paul Cheney to his family clinic on Alder Street. In 1983 he started seeing patients with a curious flu-like illness, unusual in it’s severity.

    With standard testing, it lacked diagnosis. As the original patients worsened, more people with what appeared to be the same crushing fatigue, fever and flu, found their way to the clinic. Teachers, bankers, and athletes saw Dr. Peterson and not only were they debilitated by this illness, but what also caught his attention was how they all used similar language to describe it’s dogged persistence.

    They reported incapacitating fatigue, bodies encased in lead, memory loss, trouble with simple addition, sore throats, muscle aches, head aches, exacerbated symptoms after exercise and to the one, assumed it would resolve itself in time. But it didn’t. Blood tests were normal with the exception that some white blood cell counts were off a little, which implied a virus, but that was all. Usually even a severe viral infection will resolve itself in four to six weeks, maybe eight, but with these patients, nothing was resolved, they got worse, and alarmingly, their numbers grew.

    Dr. Peterson tested for anemia and diabetes, hypothyroidism and hepatitis, all with negative results. He expanded the tests to look for cancers of the blood and immune systems, again with negative results. It was a mystery.

    Epstein Barr was a new (1983) and poorly understood herpes virus that today affects 90% of the world population. It usually remains dormant, but when activated, is the cause of mononucleosis, a long-term flu-like disease transferred by saliva, which gives it the dubious name of the kissing disease.

    Mono traditionally affects younger people, age range from fifteen to thirty. Most of Dr. Peterson’s ‘mystery’ patients were older than thirty and while some had signs of reactivated Epstein Barr, they all tested negative for mono. The sickness was a puzzlement and within a year the doctors on Alder Street were treating more than 135 people and were alarmed enough to notify the State Health Department with fears of an epidemic.

    The State health officer in charge dismissed their call as frivolous because he didn’t “know” them and because “weird things happen in Incline Village. The place isn’t normal.” (1.) And that was it. It was a strange town to begin with and these guys were new. He apparently gave them no credibility and dispatched a bulletin to local hospitals and clinics announcing that there was no outbreak of chronic mono in the county. One guy.

    Still, small towns being what they are, rumors spread, and because this was such a wealthy community, the now controversial illness was dubbed the Yuppie Flu.
    Established physicians in town were increasingly disturbed by the newer community practice and the young upstarts who were stirring up the kettle. When the same patients looked for second opinions they were told they couldn’t have this mysterious disease because it didn’t exist, period. They were labeled as difficult personalities and called neurotics and malingerers.

    They were thought to be looking for a name to adapt to and hide behind, especially because they went to see many doctors. Seeing many doctors was considered a sign of instability and made these patients delusional hypochondriacs.
    [Note: Could it occur to these physicians that sick people see more than one doctor when they find no cure and continue to be sick? My God, what else is there to do?]
    So maybe these more established doctors in town listened, but they certainly didn’t hear. At the Peterson and Cheney clinic the number of people with the same list of symptoms, devastating fatigue, sore throats, cognitive difficulties, muscle pain, and severe headaches, now exceeded two hundred. For a tiny hamlet high in the mountains, this was astounding and the doctors were alarmed.

    It’s one thing to say it doesn’t exist but say that to a packed waiting room. What was equally disturbing was that it didn’t go away. The first people they had seen continued to be terribly ill, homebound and bedridden, only now, they had lost their jobs, in some cases were losing their homes and were fighting to save their marriages. Many had already fallen through the cracks.

    The doctors contacted the Centers for Disease Control (CDC) in Atlanta and after many delays, were assigned two young and inexperienced epidemiologists to investigate the outbreak. Luck of the draw to be assigned Tahoe. The CDC team went to Incline Village with trained skepticism. The state health officer in charge didn’t recant his original position and again dismissed the young doctors. To support his stand he cited the fact that their medical tests were inconclusive, and that no other doctors in town believed it to be true.

    Of course, as always, self reported illnesses are cast with suspicion and there was an unspoken awareness that some doctors will report an epidemic for fame and fortune.
    The CDC guys saw possible opportunism and with this in mind, conducted their study. Out of the gate, they eliminated anyone who might have had a symptom that was consistent with a known disease and narrowed the field of study from two hundred to fifteen, hardly an epidemic. They collected the charts, had some blood drawn, and interviewed a handful of patients.

    They took time to hike the mountains, after all, Incline Village is beautiful, then brought the collected materials back to headquarters and holed up to write their report.
    The doctors in Nevada were unsettled because the boys from Atlanta didn’t appear to listen to the patients and didn’t really hear the whole story. When it passes through your examining room two hundred times, it paints a picture.

    A handful of charts and blood from fifteen was hardly a sketch. On the other hand, the epidemiologists were equally put off because nothing was obvious. The community cast suspicion. And besides, there were too many symptoms. It couldn’t possibly be an epidemic with so many symptoms. The few patients they saw didn’t look ill and they actually pondered collusion between the doctors and patients for some yet to be determined gain.

    The story leaked to the media that CDC epidemiologists were in Incline Village to investigate the mysterious flu and the local Chamber of Commerce was outraged. The doctors tried to be up front with the press but that only made things worse. It was sensationalized. Now they were a pariah on the town and scorned for trying to ruin the local economy. They were refused service at restaurants and their children were taunted at school. But that didn’t stop the steady flow of patients, dazed, bewildered and bedraggled, who found their way to the clinic on Alder Street because they were sick and there was no where else to go.

    Stephen Strauss was a scientist with the National Institutes of Health (NIH) and in an issue of Annals of Internal Medicine, wrote an article entitled Persisting Illness and Fatigue in Adults with Evidence of Epstein Barr Virus Infection. The same magazine had another article by researcher James Jones called Evidence of Active Epstein Barr Virus Infection in Patients with Persistent Unexplained Illnesses.

    Both referred to patients with a prolonged unexplained flu whose routine tests were normal. They also established that these patients developed “adverse consequences,” (2.) which meant they had psychosocial problems and accrued an anger and distrust of medicine. The presence of an activated Epstein Barr Virus however suggested an immune dysfunction possibly of a separate cause. It was possible that these people weren’t just nuts. It was also noted that AIDS patients shared an activated Epstein Barr infection which also pointed to an immune system abnormality.

    At the same time, physicians from around the country were reporting similar cases of this unexplained flu. Harvard physician Anthony Komaroff had patients in Boston with cases similar to the ones in Nevada. He recognized their severe disability and its extreme duration. Dr. David Bell in Lyndonville, New York was investigating a cluster outbreak that had devastated two large families in that small town. Other reports came from San Francisco and Los Angeles, Key West, Florida, and Raleigh, North Carolina.

    It appeared that there was a form of chronic mono, only far more severe, appearing in clusters, around the country. For the doctors whose practices were inundated with this, contagion was a major concern.
    The New York Times published an article that described the new “syndrome” (3.) and included an address for a charitable foundation in Illinois. Within days, the foundation began receiving huge amounts of mail, and within a few weeks, there was enough to instigate a postal investigation. That’s a lot of mail. They received more than 12,000 letters from people seeking help and advice. This was generated from one article. Must have struck a chord.

    As Peterson and Cheney continued treating their patients, it became more and more obvious that cognitive difficulties played a major part. They had accumulated stories of strange and bizarre behavior, math teachers who couldn’t add, truck drivers getting lost within blocks of their home, parents forgetting their children's names, and repeated cases of amnesia and blackouts. One patient wrote, “Of all the things I’ve lost, I miss my mind the most.” (4.)

    There was an emerging new technology called Magnetic Resonance Imaging (MRI) in which a machine was able to ‘see’ cross sections of body organs with an amazing new clarity. This machine was able to recognize the brain lesions which have now become a diagnostic marker for multiple sclerosis. MS, it should be noted, was called the “fakers disease” in the early 1900’s.

    Dr. Peterson sent some of his patients to San Francisco for MRI’s and more than fifty percent of the results were abnormal. There were brain lesions of a new and different nature. They partially resembled those identified with Multiple Sclerosis, but were smaller and in different parts of the brain. It was new science. Little was known about how to interpret the results, but nothing that showed up on an MRI was ruled to be insignificant.

    Ultimately, all they knew was that lesions were there and people were sick. They sent two patients with their brain scans to the Infectious Disease Department at Stanford University for expert interpretation. After review of the images and with no physical examinations, two Stanford physicians concluded that the problems were somatization disorders. The patients felt ill because they were “taught to believe they were ill.” (5.)

    They were over studied. One of the patients expressed outrage and contempt that these two doctors, neither of whom were psychiatrists, and after a combined fifteen minutes with her file, would label her a psychiatric disability. Our doctors in Nevada were similarly discouraged by the cavalier attitude in which their patients were discarded; after all, they were actually held responsible for the belief structure that made their patients ill. It was a classic case of shooting the messenger. One can hardly imagine the motivations.

    From his office in Boston, Dr. Komaroff saw similarities between his patients and those with the reported mysterious illness in Nevada, He recog-nized, that with the smaller and more controlled population out west, he could get a clearer picture of the new disease, so he went there, and saw the evidence Dr. Peterson had collected and did the scientific study that the government didn’t do. He interviewed all the patients, filled out detailed questionnaires and collected blood samples.

    The difference between the Komaroff study and the CDC investigation was that Dr. Komaroff, because of his repeated contact with these types of patients, had a personal belief that there was something to find and immersed himself in the necessary evidence to do so. The government team approached the case with an admitted bias of disbelief and worked towards justifying their skepticism.

    Lymphocytes are white blood cells that are divided into two categories, T-cells and B-cells. T-cells are derived from the thymus gland and coordinate immune system reactions. There are three types of T-cells: helper, killer, and suppressor and each of those has subsets (CD-4 - CD-8). B-cells fight infections. A lymphoma is a malignant tumor derived from B-cell lymphocytes and related to the Epstein Barr Virus.

    Dr. Cheney found cancers in a number of patients with reactivated Epstein Barr, and sent samples to a biochemist experienced in another new technology called flow cytometry, which allowed researchers to measure their results cell by cell and was used effectively in following the progress of B-cell Lymphomas. The Tahoe samples showed evidence of an unknown cell-destroying virus, a deficiency of B-cells, and a reverse helper to suppressor ratio of T-cells to the AIDS virus. They called it the “mirror image of AIDS.” (6.) Hardly normal.

    Robert Gallo worked for the National Institutes of Health and was credited with discovering the HIV virus that caused AIDS. His team had also discovered a new herpes virus, the sixth, or HHV-6, and all of the Nevada samples tested positive for this new virus.
    So was it cancer? The mirror image of AIDS? Or a wholly new virus waiting to be identified? Different research laboratories around the country were having dramatic results and all the tests needed to be duplicated and reviewed and duplicated again. There was a lot of work to do.

    Tens of thousands of people now were clearly identified as being desperately ill, with no recourse, and in need of immediate results. It was at this time that the two young epidemiologists from the CDC released their report from the Tahoe study. Their official determination was that the two doctors in Nevada had misdiagnosed all their patients. They said that Chronic Epstein Barr Virus could only be determined after eliminating known autoimmune diseases: heart, liver, kidney and pulmonary diseases, anxiety, depression and chronic infections like tuberculosis. (7.)

    They determined that there was no conclusive scientific evidence that the disease existed and any diagnosis that said otherwise was unreliable. And that was that. When they heard of the Peterson and Cheney studies with MRIs and flow cytometry tests, they appeared angered because the two small-town doctors were trying to do their job. The new evidence was discarded.

    And so it was, that, in the course of an afternoon, the results of the Tahoe Study became the official position of the CDC. It was now federal policy that individuals with these symptoms and whose physicians determined them to be suffering from this disease were part of a mass fantasy and a coordinated social hysteria. It was determined that when they formed support groups to get help, they reinforced their delusion and became a “subculture of invalidism”. (8.) The confirmation of the now familiar symptoms became established as a psychiatric disorder among suggestible women, and further sanctioned research, especially attempts to identify a new virus, was assured a snails pace.

    And as if that wasn’t enough, references to the Tahoe Mystery Illness, or Chronic Epstein Barr Virus became a standing joke on the CDC campus. They laughed at it. Cartoons and memos ridiculing the sick were commonplace. A fictitious letter from a chronic fatigue sufferer begging for research and drugs, asking for help with Social Security and Workmans Compensation, and signed “I.M.Zapped” from “Wornout, California,” (9.) was posted on the Chief Examiners door. It remained there for years. Snickering was official policy.

    Marc Iverson was a vice-president of Barclays America Bank when he became ill. It started with the worst sore throat he’d known and extreme exhaustion. He experienced neurological disorders, trouble with balance, slow thinking and non-restorative sleep. He was bedridden for five years. His father was CEO of a Fortune 500 company and that meant sending his son to the Mayo Clinic in Rochester, Minnesota. For most patients, the Mayo Clinic was the last resort. Marc went there twice. The first time all his tests were normal.

    They said he was fine, a type A personality who needed to get off the fast track. The second time, again, his tests were normal, only they had him take their “Minnesota Multiphasic Personality Inventory,” (10.) and that test showed him to be feeling inadequate toward his father, and thus depressed. They sent him to a psychiatrist.

    This became a pattern at the Mayo Clinic with chronic fatigue patients. They determined them to have emotional problems, either anxiety or depression, caused by a prolonged reaction to stress. Patients reporting symptoms of chronic fatigue were given the MMPI immediately and the psychiatrist's diagnoses were reported to their primary care physicians, their employers and their insurance companies.

    They were prescribed antidepressants and encouraged to exercise. Later studies would show that even brief exercise with CFS patients causes a decrease in oxygen to the brain which exacerbates their fatigue symptoms for days afterwards. As a result of these practices, repeatedly, patients left the best clinic in the world terribly ill, their disease misrepresented to their family and work associates, and with a prescription for disaster.

    The National Institutes of Health (NIH) was receiving thousands of letters from people claiming to have the still unnamed disease as well as increasing Congressional inquiries in response to constituents. The National Institute of Allergy and Infectious Diseases (NIAID, a division of NIH)) responded to the Congressmen and others with form letters touting a vigorous pursuit of this illness when in actuality no new investigations were underway and the overwhelming belief among their scientists was that this was a psychiatric disorder.

    Stephen Strauss, who had previously written the article about the Epstein Barr Virus and persistent illness, no longer believed the poorly understood virus to play a causative role and sided with the psychiatric definition. He did a trial study of 24 CFS patients with a powerful antiviral drug called Acyclovir. Dan Peterson had experienced promising results with a substantial reduction in brain lesions with patients who were treated within the first year of taking ill and Dr. Strauss conducted this study at his request.

    The average length of illness of the patients in the Strauss study however was 6.8 years. Of the 24 patients, 21 felt improvement after the treatment, eleven of those were given Acyclovir and ten a placebo. End of story. From that point, he pursued a psychiatric definition.
    Because his was the only study taking place under the umbrella of Health and Human Services, he continued to get relentless inquiries by mail and by phone from desperate people. He set up an answering machine to steer the calls away from his office. This attitude of indifference and dismissal became ensconced as the rule of the land from the top down and permeated the medical community.

    Physicians who claimed it to be a valid disease were openly ridiculed. Researchers were repeatedly denied grants to pursue a viral illness (that didn’t exist) and active pursuit of a cure was the kiss of death for aspiring medical careers. Those who sought insight and progress on their own did so by piggybacking research results from cancer and AIDS studies, because that’s where the money went.

    Health insurance companies were increasingly concerned about the spectre of a long term disabling brain disease and with the national shift in attitude and definitions, were able to justify rewriting their policies so that applicants with a history of Epstein Barr or Chronic Mono were denied coverage. HMOs discontinued medical services to these patients and because Chronic Epstein Barr was not officially recognized as a disease, medical reimbursements for drug treatments and therapies were denied.

    The Social Security Administration followed the example set by the CDC and because there was no definition of a disease at all, they had no classification and also denied benefits. Tens of thousands of sick people were systematically neglected and discarded. (Bastards probably made it all up anyhow.) And this came from men who took an oath.

    But it was just business. It was insurance companies covering their asses and little people in institutional settings doing what they had to do to keep their jobs. But it was personal. It had to be. And whatever went on behind closed doors and among those hallowed halls did nothing to support the doctors across the country who had to do something about the sick people who filled their waiting rooms. Surprise, surprise, just because a government honcho said it was psychiatric and passed the buck, it didn’t go away.

    Small trusts and private donations funded some studies in an attempt to unravel the mystery in spite of the Federal setbacks. There was a group from Japan that called it Low Natural Killer Cell Syndrome because of what they had found. Other physicians were focused on the brain lesions that appeared in the MRIs and because of the profound cognitive impairments, professed it to be an organic brain syndrome. Still others were following the discovery of the new herpes virus and because of the consistencies in the blood work, speculated it to be viral in origin. So, was this something new or had it happened before? And if it wasn’t Epstein Barr in origin, what was it?

    The Government was forced to continue some form of policy in this matter because of the constant barrage of mail and phone calls, not to mention the outcry of physicians who recognized the deception, and Congressmen who were empowered by their constituency. It wasn’t going away. Needing to establish an identity, the CDC pondered the history and because they had rejected Chronic Epstein Barr Virus as being causative, determined it needed a new name. Some said it was an age-old illness called Neurasthenia which had a recorded history of isolated outbreaks. Others were convinced it was new, because it was far too bold and obvious and shared a parallel with AIDS.

    Modern versions were called Epidemic Neurasthenia, and Atypical Polio Myelitis and Encephalomyelitis which were all viral in origin, but focused on an inflammation of the brain. There were also histories of isolated outbreaks, among hospital populations, convents, and among flight personnel. Even Beverly Hills had their own version called the Hollywood Blahs.

    The media turned up the heat when both Rolling Stone and Time magazines wrote about the Tahoe yuppie epidemic and the New York Times said the virus had the experts baffled and called it a health hysteria. ABC’s Nightline pondered whether it was biological or emotional and brought out the same Stanford physician who dismissed Dr. Petersons’s brain scans and made the fifteen minute psychiatric diagnoses. He pronounced it to be many ailments, especially when patients gathered on their own to create an identity.

    He was serious. He actually thought that sick people developed it on their own and the more media attention it got, the more fuel it gave them to justify their cause. Then came the interview with the resort owner from Incline Village who said “With these people, it’s just as important to have EBV (Epstein Barr Virus) as a BMW.” (11.)

    The ball was still in the CDC court. Some argued on the side of the insurance companies. They worried that any form of diagnostic criteria would give the disease legitimacy and open the door to disability benefits. A suggested backup plan was to issue a disclaimer notifying doctors that insurance claims could not be predicated on the government’s determination. In England and Japan it was called Myalgic Encaphalomyelitis, which referenced an inflammation of the brain, but few on the CDC staff wanted to unleash a brain disease.

    Others called it a Mononucleosis-type syndrome, or a post-viral syndrome, or a chronic viral syndrome, but they were voted down by those who weren’t prepared to recognize a viral etiology. The name chosen was Chronic Fatigue Syndrome. It was picked because it sounded benign and gave plenty of wiggle-room for the psychiatric definition. Chronic suggests whiners, fatigue, well, everybody gets tired, and a syndrome is merely a collection of symptoms and therefore not a real disease. It gave everyone room to move, except the patient.

    The patient stayed sick and now shared the blame. It officially made it a non-disease, the trivial fabrication of professional malingerers who just needed a kick in the ass to get back in line. It validated the researchers cartoons and jokes and effectively stifled research for decades to come. It gave the insurance companies an official reason to turn back claims and deny benefits. It did exactly what they needed the name to do, after all, disease is business.

    In November of 1987, the first ever conference on Chronic Fatigue Syndrome was held in Portland Oregon. This event was arranged by a patients group that had grown from a handful of sick women meeting in private homes two years earlier, to a national organization with more than twelve thousand members. There was a natural agenda in that hundreds of people were in attendance, many barely able to stay upright, and were there to seek insight and direction from a handful of researchers and physicians.

    A pall hung over the proceedings because of the CDC position and the lack of legitimacy this disease had accrued within the medical community. They were addressed by Seymour Grufferman, a Duke University cancer epidemiologist, who bluntly recognized the contempt in which they were held by mainstream medicine, and proposed a more definitive name, Chronic Fatigue & Immune Dysfunction Syndrome, or CFIDS. He then put the future in their lap, encouraged them to become more politically sophisticated, and warned them to avoid alternative practitioners because that would destroy their credibility with traditional medicine.
    It was apparent that he was not out to win a popularity contest, but, while his direction placed them all squarely between the proverbial rock and hard place, his frank assessment of their dilemma rang true. Imagine being so ill that common household chores become insurmountable hurdles, your brain so slow you can’t count change or read a shopping list and your only hope of serious medical attention requires enough political savvy to reverse a common belief among the entire medical community.

    Of course, while turning back the tides, you are to avoid the handful of caring compassionate physicians that offer any kind of hope at all, because their ‘alternative’ practices might offend the prima donnas you’re trying to influence in the first place. Imagine.

    The United States Congress, in 1988, awarded the CDC $407,000.00 with direct instructions to establish a surveillance system and to assign two full time people or their equivalent to research the newly defined Chronic Fatigue Syndrome. It appeare that no one on the CDC staff at the time believed CFIDS to be real. They mostly saw it as mass hysteria fueled by the media and thought that the Congress had been duped by a handful of cranky people obsessed with a phony disease.

    At the same time, the number of inquiries about CFIDS at the National Institutes of Health exceeded those inquiries about AIDS. The response was a form letter assuring whoever called or wrote that the NIH scientists were at the forefront of research in the field. In actuality, they were doing nothing and by the end of the year the money had disappeared. It was gone.

    Dr. Peter Manu, in Connecticut, published an article entitled Chronic Fatigue is Often Mental Illness. He and associate, Dr. Thomas Lane, had operated a fatigue clinic at the University of Connecticut and had determined that 129 of their 135 fatigue patients were really suffering from a psychiatric disorder. It appeared to be their judgment that these people were unable to express severe emotional problems so they sought attention with physical symptoms. Dr. Komaroff profoundly disagreed with these conclusions. While they all agreed that many CFIDS patients suffered from varying degrees of depression, what was clearly not determined was whether or not that was a result of the disease.

    A classic which-came-first scenario. Just as the Mayo Clinic had used their own mental health exam to come to similar conclusions, Dr. Manu administered what was called the Diagnostic Interview Schedule or DIS. Also in common with the Mayo Clinic was that while these psychiatric profiles were accepted as scripture by the psychiatric community, neither exam had been designed to evaluate depression in individuals who were already chronically ill. You would think that would make a difference.

    Stephen Strauss, because of his 24 patient Acyclovir trial was where the buck stopped when it came to CFIDS and the government’s Department of Health & Human Services (CDC, NIH, NIAID). He was the bottom line. In 1988, Strauss wrote an editorial, actually it was notes from a lecture, that reversed his previous assertions and flatly stated the new opinion, that chronic fatigue syndrome was a psychoneurotic condition. He recognized much of the evidence of organic illness but rejected it all for the psychopathology of the disease. It was a theory and only an editorial and while he offered no scientific data to support it, because he was who he was, it was given credibility within the medical community.

    Doctors and public health officials hang their hat on the CDC (who in this case turned to the NIH, then NIAID and Strauss), so when this guy couldn’t find what caused so many people to be sick and declared them all psychoneurotic, it became gospel. At the CDC, boldly reinforced by the Strauss opinion, they established their own definition of those who suffered from CFIDS. They continued to determine them to be aggressive professional malingerers who always overexagerated their symptoms. It was viewed as a character disorder.

    Heck, if these people were well enough to squawk so much about it, then they really couldn’t be that sick now, could they? There emerged open hostility as those charged with seeking a cure turned instead towards defining a personality type.

    In August of 1988 Congress awarded the CDC another $1,182,000 to expand surveillance and add eight more researchers full time. They instructed The National Institutes of Allergy and Infectious Diseases (NIAID) to advance their research and also asked the Social Security Administration to establish a criterion for granting benefits to people with CFIDS. Apparently, they were not aware that their previous funding had vaporized and previous instructions ignored.

    Stephen Strauss administered the Diagnostic Interview Schedule to his patients in the Acyclovir study (all of whom had been chronically ill for more than seven years) and determined that most of them suffered from depression, anxieties or phobias. Again, this study was never designed to be given to people who were chronically ill, never mind a select group of chronic guinea pigs, but Dr. Strauss decided these results were worthy of conclusions. In a bold move, he published his results in The Journal of Clinical Psychiatry.

    Because this magazine did not reach the general population, NIAID issued a press release nationwide to all the major newspapers, wire services and television stations that declared “LIFETIME HISTORY OF PSYCHIATRIC ILLNESS IN PEOPLE WITH CHRONIC FATIGUE SYNDROME.” (12.) It was now set in stone, in the lay press, the medical community, in the courts of law and among the insurance companies, that CFIDS was officially rooted in mental illness. Tens of thousands of people, too sick to work, or perform common household chores, bedridden or in wheel chairs and unable to care for themselves were branded as having psychiatric disorders. Their credibility was destroyed, with their employers, and with their families and friends, all because of a questionable conclusion to one three year old 24 patient study.

    It’s a crazy world. The Strauss paper was used as a weapon against them not only in their own doctors offices, but in courtrooms and by their insurance companies. The dominoes continued to fall because now that this was officially ruled mental illness from the highest authority in the land, any more taxpayer-funded research was quite simply without merit.

    Clearly, all of this happened well before my time. The political and medical furor that ensued, swirled in a world, that to me, was oblivion. In my healthy days, any reference I heard to the Yuppie Flu barely registered, although I do remember once sharing a compassionate moment towards those poor sons of bitches that caught it. Thank God it wasn’t me, I thought. It’s so true that you never question your good health until it gets taken away. It’s also true that we have the highest degree of respect for our Department of Health and Human Services, the Centers for Disease Control, and the National Institutes of Health. These institutions are national treasures and to even hint at questioning their integrity borders on sacrilege.

    In retrospect what I uncovered is all stuff I really didn’t want to know. And at the time I didn’t know any of it. Not a stitch. But in my early days, through the fog, and the muck and the yuck and the mental goo of disease, lurked those first round glimpses of Goliath. Little did I know that at some point in my future I would be well enough to pick up a rock.

    [This Message was Edited on 11/02/2006]
  2. tlayne

    tlayne Member

    Thank you for posting this! I am tagging it to finish reading it at a later time and to respond. Did you type all of this for us? If so, how amazing you are to put in all this time and effort! I appreciate it! Hugs, Tam
  3. Juloo

    Juloo Member

    Thank you so much for posting that chapter. It was so right on target and brought up a lot of buried emotions that I have about the medical profession as it is currently practiced.
  4. lenasvn

    lenasvn New Member

    Thanks, it's a great book! I can't afford the book, so I just went to the link to download it in PDF form for $5.00 (can I say this?). I know many of us are broke, the book is not expensive, though and can be found on Amazon as well.

    The name of it is "We're Not in Kansas Anymore:
    Chronic Fatigue Syndrome & the Politics of Disease"
    by Rik Carlson.
  5. tlayne

    tlayne Member

  6. Gothbubbles

    Gothbubbles New Member


    Wow cool! Rik is a friend of mine, a fellow Vermonter, and he's the president of the CFIDS of Vermont! His book is really good, he's handed out tons of free copies to people (esp doctors) in Vermont. You won't want to put it down!

    His association just got a bill passed into law requiring doctors to read about CFS and be educated about it. It's a landmark for CFS education! You can find a link by checking the thread about the vermont decision (you can probably just search "Vermont")

    It's so surprising to see a fan out there, I'll be sure to let Rik know that you like his work.
  7. lenasvn

    lenasvn New Member

    Let him know (saw on the site) that I'm an immigrated Swede, he posted his family and the Swedish flag in his bio. Maybe add I'm going back home again too,,,LOL!

    Yeah, his book is captivating, hard to put down. That law should be passed in every state, was it only in Vermont so far? Not bad, though!!

    I am just waking up, gotta go stretch my aching bones,,,
  8. kholmes

    kholmes New Member

    Thanks for posting. I just read the chapter. Pretty good summary of Osler's Web so far. I'd be curious to read the rest of his book.
  9. mezombie

    mezombie Member

    Printed it out so I can read it when my brain starts working again! Thanks for posting it, Lenasvn!
  10. tlayne

    tlayne Member